The use of Lipegfilgrastim for the prevention/easing of febrile neutropenia in breast cancer patient

viking1viking1 Perth, Western Australia, NORMember Posts: 190
I had febrile neutropenia after chemo 3 so as a preventative measure was given an injection of Lipeg. to take 24 hours after chemo 4.  Unfortunately, I developed all the side effects of Lipeg. (the main 1 in 10 ones - not the ruptured spleen further down the page ones!) except for diarrhoea. One was a temp of 38.2 so off I went to hospital with another dose of neutropenia and pneumonia ... but no bugs discovered.  I also developed the terrible bone pains in my legs and sacral areas. I would like to know if others have had a similar experience after Lipeg.? In hospital I asked the Dr if it had caused the neutropenia and he said no, if anything it had made the neutropenia less severe. I also asked if it would be better to skip the next Lipeg. dose after chemo 5 and he laughed. But I am actually wondering about this. It's taken a while to recover from all the flu like symptoms after taking the Lipeg. and I'm starting to feel human again. I've looked at some research but was just wondering if others have had probs with Lipeg. and what they have done about them. (I know to ask chemo onc but would like to hear other people's experiences.)
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Comments

  • ZoffielZoffiel Member Posts: 876
    I asked the same question. The only way around it that I could find was to have daily blood tests and only have the booster if my white cells crashed. No one was happy about that as it was onsidered too risky, and in the end I was talked out of it. Try the loratadine, you may find it does the trick.
  • AllyJayAllyJay Member Posts: 103
    I had the Neulasta injection (pegfilgastrim), the day after cycle 2, 3 and 4 of AC chemo due to severe, that is 0 zero, not point one or point two, but zero neutrophils after the first cycle and febrile neutropenia. Still got the febrile neutropenia after that for each cycle, but was told that it shortened the time for the neutrophils to bounce back. It did not prevent it, I was told. I also had terrible sacroiliac pain, (where I used to have back dimples, waaaaay back in the distant past), as well as in my shins. I found my trusty wheat bags, heated in the microwave, (nurses turned their heads the other way), helped the most. Than and a pillow between my legs from knees to ankles when lying on my side, to prevent my hips being twisted sideways.
  • UnicornkissesUnicornkisses Central CoastMember Posts: 361
    I had the Neulasta injection after I had neutropenia after the first FEC. I then had them after all the next 5 chemo infusions.
    Clarytyne starting the morning before the Neulasta and continued for 4-5 days reduced the bone pain to bearable and treatable with just Panadol. The chemo gave me bone pain anyway.

    I did still have a short issue with Neutropaenia with FEC inspite of the Neulasta, but it was resolved by the blood test the day before the next dose.
    It was when switching to Docetaxol that I really had problems. 
    My temperatures rose on day 4 evening and I ended up in hospital on IV antibiotics for 10 days the first dose and 4 days the second. CTscans, faecal and urine tests and multiple blood tests every day showed nothing. But my body apparently had a strange way of building the white blood cells back up giving low readings for mature cells but okay for the others. The Oncologist was concerned but we decided to push ahead as planned and I got through okay.
    I was on oral antibiotics for the last Docetaxel just to prevent the temp rise which mostly worked.

  • viking1viking1 Perth, Western Australia, NORMember Posts: 190
    Thank you ladies ... it does look as if, I guess, I would be wiser to take it though I am a bit horrified by some of the worse side effects eg burst spleen. It also brings home that there are many of you/us getting neutropenia. I originally thought it was unlikely as a lot of the books I've looked at don't really focus on it, even the Cancer Council one. It says what it is but not management of. plus I was told to take the loratadine if I got a rash by the reg. ... not for bone oedema.  Thank you for educating me!
  • viking1viking1 Perth, Western Australia, NORMember Posts: 190
    @Unicornkisses re your experiences with docetaxol ... sounds just like mine☹

  • PaynePayne Forster NSWMember Posts: 45
    I had the Lipeg.. from first cycle and experienced horrendous pain in lower back and hips. (akin to labour pains) I was not told to expect this and thought something was terribly wrong.  As it was after 5pm I thought I would have to present to ED but a visiting friend gave me some miracle tobacco and within 15 minutes the pain disappeared .  The following cycles I took Oxycodene at the first sign of pain and that managed it to acceptable level.  Then, of course, had to take something to offset the inevitable constipation.  The oncology nurse phoned after few days post cycle and she told me some bone pain is normal few days after Lipeg.. injection.   Like all the other cocktails we get, side effects are not predictable and not the same for everyone.  On a good note, I never developed neutropenia.
  • viking1viking1 Perth, Western Australia, NORMember Posts: 190
    @Payne I was actually thinking along similar lines today about asking for a pain reliever that if I have to use it, is a step up from panadeine forte.  How accommodating are the chemo oncs on this?  I don't see mine this time before chemo as I had a week off re getting better from last neutropenia so am wondering if I should ask the chemo nurse on the day to speak to a reg. as loratadine didn't cut it. I found I was having to have about 2 hot baths an hour with leg and sacral pain and just thrashing around in bed crying with pain and agitation. Tried pacing around but was bent over. Hence reluctance to take the shot but also reluctant to get sepsis or some other god awful complication! Your regime seems to have worked well and avoiding neutropenia is great as from second time around I had side effects from that which continue.  Maybe once I am having chemo the reg. could ask the consultant if they are on the floor if I make enough fuss? I tend to be a do what they say person and am only just discovering I have a say too. xxx thank you!
  • PaynePayne Forster NSWMember Posts: 45
    The oncologist is not going to recommend you smoke a joint and I don't know if medicinal marijana? is available but when I told them the excruciating pain 3-4 days after injection they immediately prescribed oxycodone.  Also ask them to prescribe an aperient (movicol/ coloxyl & senna or something) for constipation>  You  don't need a script for those but is good to have them write it up anyway.  You should;t have to make a fuss, and is sad you have been left like this.  Does the oncology nurse phone you few days after your treatment?
  • Molly001Molly001 Member Posts: 293
    @viking1 ALL of my docs (gp included) were more than happy to prescribe endone for bone pain. I only needed it the first neulasta shot then I got very little pain for the next 5. If you cant get in to see oncol get into your gp.
  • viking1viking1 Perth, Western Australia, NORMember Posts: 190
    Hi @Payne and @Molly, no I didn't expect an offer of MJ lol ... maybe in Amsterdam! I'm public so maybe that's why I don't get a phonecall.  I will do as you say and if can't organise a script on chemo day, then ask GP as it was enough pain to make me want to stop the injections and just see if I got neutropenia or not.. I know I have to have the Lipeg script filled on the day, this Monday, at the hospital dispensary, so maybe talking to chemo nurse will help.,and she can wrangle a Reg for me. Honestly, the chemo nurses seem very good. Very good you didn't get the pain Molly!
  • PaynePayne Forster NSWMember Posts: 45
    I am also public patient and before every chemo treatment had a quick consult with oncologist.  They should also be able to fax a script to your pharmacy.  Yes, if this not your case, talk to onco nurse and she should be able to organise it.  Sounds like you might have to make a bit of noise ( as in jump up and down and some heartfelt sobs should do the trick)
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 27
    Hello @viking1,
    Sorry to hear about the associated pain you are experiencing with the Lipeg injections.
    Great idea to speak with the chemotherapy nurses, let them know that what you are currently doing to manage this pain is not helping.  They can speak with oncology registrar or consultant with regards to some pain management for you.  Hoping your next treatment goes well.
  • viking1viking1 Perth, Western Australia, NORMember Posts: 190
    @Payne ... that sounds great speaking to an onc before! I rang today and asked the chemo nurse if it was possible to see the head chemo onc who I saw twice and knows my history if I could see her next appointment ... the nurse said it was unlikely as luck of the draw but she would put in a request into the booking system and see if that helped. I agree I may need to be more assertive and as my counselor said, but not be aggressive ... lol. I said it is more likely I will cry as don't have energy for aggressive! She also said to be very firm and not go home without the assistance I need.  So will try that! @Giovanna_BCNA thank you for your good wishes. With the help of the good women on this site I am getting to learn the ropes and this crisis in confidence and neutropenia related melt down has shown me how valuable it is to have people to talk to here who can offer that little bit of hope or encouragement or even just a hug when you feel the cancer is the driver's seat. xxx
  • Sunshine0206Sunshine0206 Member Posts: 5
    Hi there,
    I had neulasta after the second AC cycle with minimal side effects however the dose  after the second AC was beyond horrific. 

    Onset of pelvic pain with pv bleeding and a syncope. The pain was like my induction labour. It subsided as quickly as it came but not before I had presented myself to the local ED in agony. 

    Bloods revealed that my wcc had gone up to 36 in that short time. 

    I elected not to have the next dose after my last AC 2 weeks ago. I have had weekly bloods since. Most recently today and I’m waiting to see what neuts are today. I have no fever and am just the usual bit tired. 

    X


  • Sunshine0206Sunshine0206 Member Posts: 5
    Dose after third Ac - I mean.
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